Looks like I outsmarted all of my doctors AGAIN!!!!!

Well, my latest aldosterone level was just posted on the hospital's patient portal a few minutes ago. If you recall when it was tested on July 11th, it was found to be 4. Normal is 4-28 at the lab where the test was run. When I learned that diuretics can raise cortisol and aldosterone levels, and I had been taking diuretics for 2 weeks, stopping only 4 days prior to this blood draw, I requested that these tests be reordered. My PA agreed to this. My new level came back at <1!!!!!! It looks like I have indeed diagnosed myself for the second time in 3-2/3 years!! I cannot describe how happy and how excited I am right now!!!! I can't decide if I want to call my doctors or wait for them to call me. I just want to hear them say I was right AGAIN. Actually, since none of them have ever acknowledged the fact that I was right all along with the hyperparathyroidism, I don't expect them to admit I was right this time either.

At my last appointment with my PA, she said, "I really don't think it's your adrenals causing this. There really is no reason that your adrenals would be having trouble." God bless her. I do love her, but I still don't know why she assumed my adrenals were in good shape, and there was no reason for them to be malfunctioning, when I have soooooooo many symptoms! I am wondering just how long I have been dealing with this! As I look back now, I can remember feeling some of the symptoms for at least 30 years! That was when I first started having trouble with edema. I saw probably 20 doctors over the years for this problem, and none of them could ever figure out what was causing it. I can't believe NONE of them thought to test my adrenal function! I can't believe nobody ever thought to test my aldosterone, since it is the hormone that regulates our fluid balance and our blood pressure!

You all need to know that no matter what health issues you face, you can learn just like the doctors can learn! All you have to do is look for the answers. They are right there for us all to discover! If your doctor can't figure you out, hit the internet, and don't ever let them tell you to stay off of the internet! My doctors told me that more than once. I never listened to them. Had I stayed off of the internet, I would still have 2 parathyroid tumors in my neck, and I would probably never have been diagnosed with aldosterone insufficiency, and who knows how long I would have had to suffer with all of this $#!+!

Onward soldiers!!!!! There are battles to be won!!!

I would just sign this "Audrey," but tonight I am very proud to sign off as Dr. Aud!!! Hallelujah!!!!!   

Hi Dr Aud 
You are an amazing Woman a true warrior. You knew you were still unwell and you kept digging until you found the answer.
I'm so pleased these results were so dramatic that it's not obvious, even to your doctors!!!!!!!!!!!
I know nothing about Adrenal problems, I will correct that and have a look now. Shame out doctors can't just do the same thing.
Hope you have a very good day today you deserve to reward yourself and your family should be very proud of your tenacity.
Well done again Dr Aud, have a word with my Endo please.
Lots of love and hugs.
Amanda xxxx 

Well Dr Aud, what an absolute star you are! I'm looking forward to joining your clinic I'm no longer surprised that you can carry on diagnosing yourself any more! You're a legend, Audrey!! 

I must say, that although my GP, (Dr Idiot) isn't fond of Google's assistance, my Endo was all for it and was courteous enough to listen to what I had found out, expand on it and admitted to using it himself in relation to my other disease. He's quite young, so perhaps he's more tolerant of his patients looking for answers on the Internet. 

Once again, WELL DONE Dr A, you are truly an amazing person who has never given up on your long, hard slog to good health and you are an example to us all for keeping on going when it seems you're getting nowhere. You may say you are tired and weak, but I never knew anyone with more get up and go than you! I'm proud to know you   

Have a fantastic day; you deserve it. 

Lots of love, hugs and         
Brigitte xxx

Thank you for the kind words, ladies. Oh, I don't know how I would have ever gotten this far without you all! You give me the support I need when things get really tough, and I don't know how I'm going to go on. I would like you to know that as soon as I saw that aldosterone result, I emailed my sister and my kids, and I told them all I couldn't wait to post this on the forum. You are all like family to me now. I told you about this before I contacted any of my friends here.

I didn't get a chance to post on here that on Tuesday I was feeling so sick, and my blood pressure kept dipping into the 40s, along with my pulse. I was horribly weak, nauseous, dizzy, confused, and in pain. I had called my endo's office on Monday to tell them I was desperate, and I really needed help. I had to leave a message because they NEVER answer their phones. Five hours later the nurse called me. I had asked her if we could run the salivary cortisol test, just to rule out a cortisol problem. I told her I was pretty sure it was my aldosterone causing the problem, but I thought we should rule out a cortisol issue. The endo had ordered the serum cortisol, and my PA had ordered the 24-hour urine cortisol, but I keep reading that many times the serum and urine cortisol levels might look normal, when the salivary cortisol test will pick up a problem. She said she would ask the endo about it and call me back either that same day or the next day. I waited all day for her to call. No call. I waited til 2:00 the next afternoon, and she still hadn't called! I got mad and called them again. This time I called the appointment line. I knew THEY would answer the phone. Funny, isn't it? They won't answer the phone if you need help and feel like you're dying, but if you want to make an appointment, they pick that darned phone right up!! I told them I was in dire need of help, and I needed an answer regarding the salivary cortisol test! The nurse called me back a few minutes later. She told me the endo had taken a look at all of my lab results of July 11th and determined everything was normal!! ????? Everything was normal???!!! I was really getting angry at this point! She did tell me how I could order the salivary cortisol test online, but that I would have to pay out of pocket for the test. The cost would be $120. I told her I would probably wait until my latest aldosterone test result was in and take it from there, since that result should have been in at any time. She suggested I see a cardiologist because of the edema and low blood pressure. I told her I have had my heart checked many times over the years, and it is always in great shape. I told her again that I really thought it was the aldosterone causing my problem.

In the meantime, I called my PAs office to discuss my condition with my PA. Unlike my endo's office, these people will returnn a call within an hour of 2 most times, if not sooner. I spoke to the girl at the front desk. I asked her if my PA was in. She was not. She was out for the week. It just figures! I asked if I could speak to her nurse. She told me she would connect me to the nurses line. I told her I would rather not leave a message, that I really needed to speak to her right then. She was so kind. She went off looking for the nurse. The nurse picked up the phone. I told her what was going on. She told me she would have to discuss this all with a doctor there at my PA's office, but she felt certain they were going to tell me to get to the hospital. A few minutes later, one of the doctors called me. She told me I needed to get to the emergency room at the hospital and let them determine whether or not I needed to be admitted.

I got off the phone and decided I really did not want to go to the hospital, because I really did not want to be admitted at this time. I had made those 2 appointments for my cats, and I really wanted to get them taken care of first. So I didn't go. I just kept checking the hospital's patient portal to see if my aldosterone test result was in. I'm guessing my PA and all the doctors she works with will not be too happy with me when they learn I didn't do as I was told, but my PA will probably laugh after she is finished scolding me, because I am well known for not doing as I am told. She teases me about this all the time. It's not that I am a little rebel, it's just that a lot of things they tell me don't make any sense. I do realize that not going to the hospital may have been a bad decision, but I figured if my blood pressure had been in the 40s for a couple of months, a couple more days probably wouldn't really matter. I know, it was stupid.

So the past couple of days have been very frightening and very exciting. Yesterday I did not feel quite as sick as I did on Tuesday. I even managed to run out to lunch and to the store. I was terribly dizzy while I was out though. When I came home, I decided to go out and try to do some yardwork. I think I bit off a little more than I could chew. The sun seems to make VERY nauseous now. It was very hot and humid, and I did not feel well at all out there! I was so dizzy, I came very close to falling into our little pond! It's about to all be over though, and I am thrilled! I do hope this is the final piece to the puzzle. If not, I guess I'll keep researching.   

A VERY grateful Dr. Aud

I forgot to mention, Amanda, that my husband who rarely compliments me on anything, did congratulate me last night while I was sitting here crying tears of joy!

Brigitte, you are very lucky you have a doctor who is willing to dig a little deeper for you. there aren't many like that. I seem to have to do most of my own digging. I think I'm about to need a new shovel!!   Hmmm............you could take that a couple different ways, and both would be appropriate here!   

Hang in there everybody! Better days are ahead for us ALL!

Dr. Aud

Audrey, dear Audrey - this is a very quick reply as the Wifi connection here in beautiful Crete is very temperamental and I'm not even sure I'll get to the end of this before it spits me out again but I just wanted to say I'm so sorry you've been so scared and desperately unwell these past few days but boy how triumphant I feel for you that your tenacity and sheer determination has set you on the right path to regaining good health again. You'll be well again in no time Audrey - oops I mean Dr Aud. As soon as I get back home to the UK I'm gonna run all my latest labs by you to figure them all out for me as I had complete and utter brain failure in the days before we left and just couldn't get my head round what it all meant. Will your clinic be open around August 2nd Dr Aud? Wonderful, wonderful, wonderful Audrey - thrilled for you that you've figured it out AGAIN!!!!!

Lots of love and big cyberhugs

Jasmine x

Great to hear from you, Jasmine! I do hope your trip is going well and you are thoroughly enjoying yourself!!

Thank you also for the kind words. I have been walking on cloud 9 all morning. Now it's YOUR turn to be cured! Hopefully, your doctors will get on the ball now and FINALLY see to it that you are made well again!! I pray for everyone on this forum every day. I know that feeling of desperation and hopelessness all too well. Nobody should have to feel that! It is bad enough being so terribly sick you think death would be a better option. You should not have to continually fight to get someone to pay attention and do what they are paid to do!

I would LOVE to see your test results, Jasmine. I find this all so very interesting! I love trying to put the pieces together. Love the challenge. Not that I know what the heck I'm doing or if I can really help, but I would love to try to help you all if I could!

Yes, my clinic is open 24-7, and you can't beat my fee.    Who needs doctors?!!!!!!

My son just stopped by this morning for a few minutes. We were discussing my case. He congratulated me, and we both decided we just can't trust doctors much anymore. I hate to say that. I have always had great respect for medical professionals, but after going through what I have the past 3-2/3 years, I am changing my opinion of them. If I can get on the internet and figure out what is wrong with me, there is no reason why they can't! If they don't have time to do so, then maybe they need fewer patients! It's not about how many patients you can fit in during the day. It's about HELPING your patients!! I can tell you this; if I was not 61 years old, I might consider going to medical school now! I WOULD help my patients! I WOULD care!!!

Thank you all for the hugs!! I felt every one of them and loved them all!

Dr. Aud

Well, it looks like I have to sit and wait again for another phone call.

I called my PA's office to see if they wanted to treat me for this hypoaldosteronism, since it was my PA who ordered the test (even though I was the one who requested it) of if they would like my endocrinologist to take over for treatment. They called back and told me they feel I should contact the endo.

So I called the endo's office. The nurse actually answered the phone. I can honestly say that is the first time she has EVER answered the phone when I called. That was so nice! I told her my PA suggested I call my endo for treatment. She didn't sound too thrilled. She made me feel like they really don't want to do this, but they might consider it. I don't get this at all! I think maybe it's time to get a new endocrinologist! She then told me that the doctor is seeing patients today, so she might not be able to get back to me until tomorrow. ????? Why would she not make phone calls after she sees her patients? Is that not what doctors do? That's what my PA does.

So now I will have to wait to hear from her before I know what she wants to do about treatment.

Oh, and this is actually funny. I mentioned earlier that I am well know by my doctors as one of those patients who don't always do as they are told. If it doesn't make sense, I don't do it. I'm not saying this is a good way to be, it's just the way I am. Well, when I talked to the endo's nurse on Tuesday, she suggested I call and make an appointment with a cardiologist because of the low blood pressure, edema, and low pulse. She asked me today if I did that. I told her I didn't, but I had good reason not too. I have had problems with edema on and off for over 30 years. I have had my heart tested many times during that time, and it was always just fine. I told her I really wanted to see that new aldosterone level before I hurried off to a cardiologist, because if it was a low aldosterone level causing all of this, there wouldn't really be a need to see a cardiologist. I told her if I get treated for the hypoaldosteronism, and I still have trouble, I would have no problem seeing a cardiologist. That to me made more sense. Geez, I sure hope I don't have a heart attack or something now. I don't need doctors telling me they told me so.   

More waiting.

Dr. Aud

Well done, Dr Aud - again!
I shall be waiting in line with everyone else for an appointment at your clinic!

Meantime this is a link to an interesting thyroid forum. Although they are not experts themselves, there is some interesting information on aldosterone here:

http://www.stopthethyroidmadness.com/aldosterone/

Keep us posted on developments, Dr!

Love from Tigerlily xxxx

Thanks, Tigerlily. I actually happened upon this site during my research. I have found a LOT of interesting things!

For instance, I had no idea my craving for salt over the past few months had anything at all to do with my illness. When I read that people with low aldosterone craved salt, it all made sense!

Over the past few years when I would get a simple mosquito bite, the bite would swell to about 3 or 4 inches in diameter. This happened last year while we were all outside one night, and nobody could believe the size of a bite on my forehead. Turns out people with low aldosterone swell more from everything than people with normal levels.

I actually got a blister the other day from trimming things around the pond. At fist I wasn't sure what the heck it was because it swelled up so high. It wasn't wide, but extremely high. I even showed it to my husband to see if he know what it was. He didn't know either. Then yesterday it broke, and sure enough, I believe it was a simple blister. I have never blistered before from just trimming around the pond. I guess it happened this time because there is just so darned much fluid in my system.

Also, people with low aldosterone will tend to have edema, when, in fact, their cells are very dehydrated. Taking diuretics makes matters worse. Eating a lot of salt helps! It actually helps the edema too! Very strange! It seems that when your aldosterone is low, you have excessive thirst and urination. Your body is constantly losing salt by way of the urine. This dehydrates the cells of the body, but since the body can't regulate its fluid, it fills up with water, thus all of my edema! One day I ate quite a bit of salt. I thought for sure the next day I would REALLY be blown up. To my surprise, the water in my feet and legs looked quite a bit better the next day, and my hands didn't even swell!

A few weeks ago, I mentioned to my sister that I had to pee at least 10 times by noon! I thought it was strange that I was peeing so much, yet I was so full of water! That made no sense at all. Now I know why this was happening.

I would also like to mention that with hypoaldosteronism, a person normally has low serum sodium and high potassium. I guess my body just refuses to be normal, because my sodium level stayed the same as always. However, even though my potassium has stayed in the normal range, and mid-range at that, it has risen higher than ever before in my life. It looks like it has gradually risen over the past few months.

Just like with the HPT, my levels simply are refusing to do what is expected, which is why it is always so hard for me to get diagnosed! The only thing that has proven to be abnormal so far is the aldosterone itself, which now had plummeted!

I am wondering if I have been having trouble with clogged ears because my body is so darned full of fluid! I also have been having a lot of trouble with very thick mucus in my nose. I know this is gross! My nose does not run, bit it is always congested. Makes sense to me now.

This problem also causes trouble with muscles, tendons, and nerves. Dare I believe this is what has been causing all of my muscle and tendon pain and the muscle twitches? It also causes muscle weakness. Imagine that? I am so excited!!!

Yes, this is a very interesting problem, and now it all makes perfect sense!

Like I said before, if you all come to my clinic, you can work right along side me! We will cure the world!!!

Dr. Aud

Hey Dr Aud   good going, I have noticed that if a person has one endocrine disorder such as phpt I would think the endo's would also look for or at some of the other possibility's if ptx didn't resolve some symptoms or symptoms that came on after ptx. Hang in there Audrey.

Yes, Kathi, I have heard that also.   If we both have heard that, you would think the doctors would think of that!    I now have thyroid, parathyroid, and adrenal issues!   Well, hopefully, the parathyroid issue has been resolved, but you know what I mean.    

And, wow, this is strange, they started talking about thyroid cancer on the news right now as I started typing this! Strange!  

As far as the doctors looking for other causes, I wouldn't hold my breath.  They can't even seem to look for the ONE cause!!

Well, my endo did not call today.   I am wondering if she knows just how dangerous it can be to have an aldosterone level as low as mine is right now.   If she really knew about this condition, I think she would have found the time to call me back today!    We are getting some concrete poured here tomorrow.  I really don't want to mess up the plans by asking my husband take me over to the hospital, but I think tomorrow as soon as they are done out there, I am going to get him to take me over.   I don't think my body can go on much longer like this.   This is really bad.

I am seriously thinking about firing my endo now.    She failed to diagnose me with hyperparathyroidism; and she didn't even think to test my aldosterone and renin now.   It was I who requested to have these 2 things tested, because someone on the internet who had hypoaldosteronism posted the tests that she had done which finally got her diagnosed.      And today when I called my endo's office to tell them that my PA suggested I contact them for treatment, the nurse was still hesitant because it was not they who ordered the aldosterone test!    So I guess if I go to the hospital for help, they will refuse to help me because THEY did not order my aldosterone tests?!   How stupid!  I think maybe the endo just doesn't want to be bothered.   Maybe she doesn't know how to treat this!

I am going to get on the internet now and search for another endo.   This is not my kind of doctor.   I will not pay someone to misdiagnose me and then ignore me when I finally diagnose myself!

Also, my renin level was just posted on the patient portal.   It is 0.18.  Normal is 0.28-5.82.   It was flagged also.   I don't know a whole lot about renin yet.   I know it is an enzyme that is made in some special cells in the kidneys.  It works with the aldosterone to regulate blood pressure.    I think I'd better go check my blood pressure!     For the past couple of hours I've felt very exhausted, weak, shaky, and nauseous.   I feel awful.    I feel like I'm about as far as I can possibly go without some help.

Dr. Aud

Audrey, I really don't think you should wait too much longer before seeking treatment, it sounds to me as though you are becoming/have become very debilitated and poorly; please give some serious consideration to going to the ER. I'm worrying about you ......

Jasmine x

Audrey, Jasmine is right, you sound as though you need treatment sooner rather than later. I hope your next post tells us that you have sought help, because you can't carry on as you are. Please look after yourself. 

Love and hugs 
Brigitte xx

Audrey
Please don't wait any longer to seek help, I'm very concerned about you.
Lots of love and hugs Amandaxxxx

Hi Audrey,

Well done in your perseverance in diagnosing yourself for a second time!
you must put yourself first and if you feel that ill again, you should go to the emergency room, i have a motto " Always listen to your body and follow your instincts "
Sending healing thoughts

Diana x

Thank you all so very much for your concern. I am still very shaky and weak this morning, but my blood pressure looks a little better. I can still tell something is very wrong though. I have decided if my endo doesn't call by early afternoon today, I will probably just go over to the hospital. I can tell I really need to be treated.

The concrete has arrived here for the pouring of our sidewalk and steps. I will make a decision about my health situation very soon! I need to go take some pictures right now.

Thank you all again! Love you all!!

Audrey

Well, it just figures. I stepped outside for a few minutes to get some pictures for my granddaughters who were not able to be here today to watch the concrete pouring, and my endo's nurse called. I really did not expect them to call for quite a while. This really surprised me! She left a message, saying the endo has reviewed my lab results and wants to refer me to someone else. Not sure if this is a good thing or not. I was afraid she might not be quite sure how to treat this, so I guess it's a good thing, but I am worried that it must be something quite out of the ordinary if she has to refer me to someone else. I called back but had to leave a message. I do hope the nurse calls back again soon. I'll keep you all posted.

Audrey

Well, my endo's nurse called. My endo does not feel this is an adrenal issue alone since the renin is also low, and not just the aldosterone. She feels it is a kidney problem. I am really scared now! She wants me to see a nephrologist. I called our local hospital to see if they have any nephrologists over there. They do, but they can't see me until September 9th! I told the man I am very sick, and I really need help NOW. I told him my blood pressure keeps dipping into the 40s, as does my pulse. He suggested I get over to the emergency room at the hospital, let them take a look at me, let them run more bloodwork, and let them decide if I need to be admitted, or if I can possibly wait for that appointment with their practice. I guess I will be heading over to the hospital very soon now. My husband can't take me now because of this concrete work going on here. He needs to be here. I don't know if I should drive myself or just wait until this evening when the workers are gone.

If I am admitted, I might not be able to keep in contact with you all, as I don't have a smart phone. I don't know if I can take my laptop. I will try to send you something as soon as I am able. I am really scared.

Audrey

Hi Audrey,

On a positive note it is good that your going to the hospital and if you end up being admitted at least they can keep an eye on you!

I know its scary and take solace that you are in the best place and that you will have a lot of love from the people on this forum coming your way!!

lots of love and healing thoughts

Diana x

Hang on in there, Audrey.

Can you just let your husband know that you need to go to the Emergency room and it would be best for him to drive you? Perhaps he could wrap up the concreting as early as he can and then drive you over?

Meantime you pack a bag with what you might need in case they wish to keep you in a monitor you.
It might be a good idea if they do, because then you will have the correct professionals on your case - and all under the same roof.

Don't worry about us - we know you'll post when you can - you need to be a bit selfish now and take the best care of yourself.

Love from Tigerlily xxxx

Audrey, I know you're scared, but you're doing the right thing and heading in the right direction. I really don't think you should drive yourself though. I strongly agree with all that Tigerlily said and wholeheartedly agree that you need to put yourself first. 

Wishing you the very best of luck, love and hugs 
Brigitte xx

Audrey OMG I am so sorry to hear this. I agree with  everyone, go to the hospital, maybe a friend can drive you if hubby can't. Hospitals like to run a lot of tests so maybe they can get the ball rolling sooner. Please keep us posted.    hugs Kathi

Well, I am back from the hospital. They didn't think it was necessary to admit me. YAY!

They did an EKG, a chest x-ray, and drew a lot of blood. They checked my kidney function, which is what I was really worried about. They told me they are not sure what is going on with my kidneys just yet, but that they are healthy and functioning perfectly normal! The doctor was not sure why the aldosterone and renin levels are low, and he wants me to make that appointment with a nephrologist to find out. He said even though I feel like crap, and I am all bloated from the low aldosterone, my kidneys are in tip-top shape! What a HUGE relief! If I had more energy and my muscles weren't so weak and I didn't generally feel like crap, I'd be doing a happy dance!

I told my husband on the way home that I still would not be surprised if this is an adrenal issue, as I first thought. My body never does what it should, and my levels never match the levels of any particular disease. As I've mentioned before, when trying to get diagnosed with HPT, my ionized calcium was always normal, my phosphorus was always normal, my albumin was always normal, etc. Now with the low aldosterone, my sodium is supposed to be low, but it is normal, and my potassium is supposed to high, but it's not. When aldosterone is low, the renin is supposed to be high, but this is MY body we're talking about here! Could I just be different and for some reason my renin is not doing what it is supposed to do? I am praying this is the case.

Also, they did a urinalysis at the hospital tonight, and I was just waiting for them to tell me I had another UTI brewing since I've been getting those little twinges of discomfort up inside of my bladder like I get sometimes. I lucked out there too. No UTI in sight!! It's only been 4 weeks since my last UTI, and I would have been VERY disappointed if I did have another one already!


Beside the point that I had a doctor who tried to explain to me that a blood pressure reading consists of 2 different numbers, 1 on the top and 1 on the bottom; and the x-ray machine malfunctioned, and they had to take 2 shots; and the girl had a bit of trouble finding my vein to draw blood and possibly give me IV fluids; and the doctor looked at my enormous feet and legs and told me that it's summer time, and it's normal to puff up a little (I'll have to post pictures of my normal summer puffed feet!); and I had to pee in a cup with wires hooked up all over me, while trying to hold up my hospital gown and not let my pants hit the floor; it was a GREAT night at the hospital! Just to know my heart is in good shape, my kidneys are functioning normally, and I don't have a UTI is reason enough for me to celebrate!

Oh, this doctor also suggested I take a diuretic and watch my salt intake. I don't think he was too familiar with low aldosterone. Normally, that is what you would tell someone who was suffering from edema, but taking a diuretic when you have low aldosterone only makes matters worse, and people with low aldosterone NEED lots of salt! So I will be speaking to a nephrologist before I take any diuretics or cut back on my salt. I need to speak to someone who is familiar with this problem.

I didn't get a chance to thank you all for your support, well wishes, and hugs before I left for the hospital. I would like to thank you now. You're all simply wonderful! Just knowing you were thinking of me and that you cared, helped me more than you know! Actually, I haven't even yet told my kids about the appointment. I wanted to get on here and let you all know before I did that.   

Love,
Audrey

Audrey, I'm so sorry I missed this thread until now. I'm so relieved for you but to have gone through all that and feel so scared is awful. It's shocking that you can't just take the doctors advice but have to constantly be on the alert for them telling you to do something that would make you worse!

Forgive me but I did find the mental image of you peeing in a cup quote funny, I can't manage it even without the wires: if I'm doing a collection at home I usually buy a foil baking tray to use - a large one - so I stand some chance of hitting it:-)

Take care of yourself m'dear.